Written from the heart, this is the unadulterated truth of life with multiple chronic illnesses and being housebound. My life open for you to follow. Please join me

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Draining daily

The day that you reach out and you ask for help, the day when you tell the world that you are no longer coping alone, isn’t the day where life gets easier, it’s the day when life is turned on its head and will never be the same again. What I wanted, was peace and quiet. Days, where I didn’t have to think or do anything, other than sit here and let life happen. It hasn’t turned out that way at all. I know this is only the start of week two, but I’m already exhausted by the whole routine. It didn’t take any brain power, to know that last week, was going to be spent teaching (my new carer) Laura, just what was needed and how I would like it done. So exhaustion was going to happen, but this is week two and I’m still exhausted. Admittedly, Monday wasn’t Laura’s fault, but it is also the perfect example of how my days appear and feel.

Monday, Wednesday, and Friday mornings are always dominated by the fact that the district nurses are here. My mornings are always the same, a rush to try and get all my Twitter stuff done before they arrive. I have, in fact, become quite good at it. My timings and routine from when I wake to their arrival is tight, but by getting everything out of the way before they are here, it means that once I’ve had my enema and gone through the results, I can relax and recover over the rest of the day. All that pushing myself around the house in my wheelchair, to just answer the door is exhausting, but then into the bedroom to undress, have my enema and chat while we wait for it to work, then off to the bathroom, where once safely on the loo, they leave me alone, letting themselves out of the house. Sometimes, I can be there quite a while, at others, it’s not too bad, but then I have to dress again, tidy up all their bits and pieces and lock the house up again, as they can’t do anything other than leave the storm doors open. That level of activity, well it’s draining and I thought having someone here to make lunch, would mean I could relax more, but that’s not the reality. It feels as though no sooner have I settled myself again, than I am once more back in my wheelchair and active again.

It doesn’t take much brain power to work out, that few meals can be prepared and cooked in half an hour, well other than ones that go ping and generally taste terrible. So before Laura arrives, I have to prepare and sometimes put in the oven whatever I want her to finish off for my lunch. During her half hour here, she also puts together my supper and sorts out my psyllium pancake, so once she is here, she is kept busy.

As I said, Monday was an extended version and total madness for me. The nurses were late, very late. Instead of 10am, it was 11:15am when for the first time that day, the intercom buzzer rang out. Of course, I thought it was the nurse, but it wasn’t, it was the postman, I let him in and had just returned to the living room when the doorbell rang. He had a parcel for me, so once more I had to head for the door. With the parcel in hand, I went into the kitchen to start on lunch and I had just put the potatoes on and returned to the living room, when bang on 11:30 am the doorbell rang, this time it was Laura. I showed her into the kitchen and I had just explained what I wanted for lunch when the buzzer rang again. This time it was the nurses, more than an hour and a half late. Somehow I had to go through that whole process. The undressing, the enema, the whole embarrassing process with three relative strangers in my home, and be ready for lunch to be served at 12:00pm. The enema was just in when the sound of the buzzer was heard again at 11:51am. This time one of the nurses answered it, it was a delivery man with another parcel for me.

12:01pm and suddenly, I had silence. The nurses had gone, the parcels where stacked in the kitchen and Laura had left my lunch going cold in the living room, while I sat on the loo, exhausted, and I hadn’t got as far as dressing and eating. So much for relaxation, so much for help, I felt deserted, totally deserted and snowballed by life. It was no one’s fault, just coincidence, but, I felt totally drained and I was wishing that I had never asked for help. I know it was a one off, well at least I hope it was, but somehow it felt like it was the perfect example of how I feel all too often. To everyone else’s, I’m cared for and my life must appear quiet and straight forward, but to me, I do nothing that is for me, it’s always for routine, governed totally by timings and events I have no control over. From the moment that the alarm clock demands that I get out of bed, to the point it tells me that I must go to bed and sleep again, otherwise, I won’t get enough sleep to cope with the next day, my life is governed by time and others. Right now, I feel as though I’m drowning in help. I know it’s all going to settle down, that it’s all going to be worth it and life will feel normal and far better than it was, but right now, I’m drowning.

Door bells and buzzers that have to be answered, not just for people who are coming to see me, but all too often there is no one there or it’s for another flat number. Every time I have to move, for others or for me, it’s draining and since I asked for help, I don’t feel as though I have sat still for any longer than a few minutes. With every extra piece of help that is added, I’m still for just that bit less time than I was. My initial belief that help would equal more energy left for me, just hasn’t worked out that way at all. I am learning to dread the very sound of that buzzer, as no matter why it’s been rung, it’s always going to steal what little energy I have. Is it any surprise that I feel as though I drowning, as though I’m struggling just to stay awake, and doubting that the logic that brought me to this point, was logic at all.

27 thoughts on “Draining daily”

Hello Pat,have missed your updates.Have you thought about a door entry phone with a camera so you can see who is or isn’t there.My house is different to answer the door meant going down stairs, a solid door stopped me seeing who was there.Answer change the door,install a door entry phone and admit or keep out any one you don’t know or want to see!!It saved my bones a great deal and well worth it.Hope it’s useful to you.Sending love and thoughts.Nx

I wish it was the easy, we would have to get everyone in the block to agree to have it fitted, which just won’t happen. We can’t even get agreement over essential repairs to the building, a door entry system just isn’t going to get agreement. I’ve thought it about it many times as going back and forward all day long to answer the intercom, is draining on it’s own. I’d love to just sit here and answer or not without having to move an inch. It’s a nice dream. 😌

Wow, I was drained reading your day! Nancy said exactly what I thought! In a perfect day, I would see your buzzer go, but also transmitted to your phone or tablet depending on which room you are in. The camera in the door should show who is there, and a box like a milk box delivery at the side of the door where small parcels can be put to be retrieved by you or whomever when it is convenient. Nutrition is important but maybe a work out a weekly meal plan? So your carers know what’s up. I know I’m on the outside looking in, and I do hope things settle down for you which I’m sure they will.

It is no wonder you feel like you are drowning. There is no excuse for the nurses to be so late. I’m afraid they are going to mess up your schedule way too often.
I do hope it gets better.
I hope Laura is a wonder and can get meals done in a flash!

In all the time they have been coming to see me, this is only the second time they have been so late. If their is an emergency, they will get held up, they are nurses after all. I knew it was a risk, but I didn’t expect it to happen so soon. They have now added a note to my file the time my carer is here so hopefully, if they are held up again, they will move on and come back to me later. 🙂

Amazon Now delivers restaurant meals free to Prime Members. Not sure if Amazon UK has Prime yet. A no-brainer membership of $99/yr you get free two day delivery on all Amazon purchases, same day and one day free delivery on many, many items; and they add more atchless perks and freebies all the time. Books, apps, movies, music, games…
Amazon Fresh is free delivery of groceries and dry goods, liquor and wine and much more in one hour. They put GPS on the delivery van so customers can follow the progress of the delivery, useful and fun

I’ve not heard of them delivering restaurant meals, but mind you, I don’t actually use Amazon. I think I bought something from them a couple of years ago, but nothing since as I can always find it cheaper else where. For that reason alone, the £99 pounds they charge here in the UK has quite simply put me off. Why pay so much for something so expensive, it doesn’t add up. I only pay £3 for a carer to be here for half an hour to make my lunch and supper, on average I can only spend about £2:50 a day for both those meals, so Amazon would be miles outside my budget 😦

I hear you sister! Sometimes I think when times are particularly hard there must be something going on in the stars. Except, I’m left alone a lot. I like to sleep a lot. Usually at the wrong times and then I struggle to stay awake while my left eye complains.Hang in there……..

I have an application in for one and we are waiting for an appointment to come through, so I hope that this time it will be successful. I have been turned down twice in the past, so it’s wait and see. 😏

How long is the wait in the UK? Since they began dismantling Medicare here once one is over 65 getting one, a motorised chair, can be very impossible – excuse my grammar because old people with disabilities are no longer catered for, and younger people need a government grant on the NDIS to do so. We have been making snide jokes such as ” Do you mean that I will walk again at 65?” Or recover my sight etc. Anyway – not your problem unless things are as bad there as here. We are paying 133.88 every 10 days for our respite which is affordable even on our pension though is greater than the Carer’s Allowance I receive.

There are very similar problems here in the UK. Aids like an electric chair isn’t judged on age but on need, but there are some stupid rules that have meant until now, I wasn’t eligible. I would have been given one years ago, if we hadn’t lived in a flat, as my needs then was for distance. The rules said you must have direct access to the street from your home, we had stairs in the way. Now that my ability to manage in a normal wheelchair even within my home has diminished, we’re hopefully it will allow them to give me one.

At the moment I receive a monthly payment from the government that is supposed to make up for the fact I am disabled. It’s supposed to cover the costs of life once disabled, whether you can work as well, or not. On top of that, I receive a payment for not being able to work, that will disappear at 65. Our systems are different, but they are just as unfair and biased as each other.

Despite the fact my husband is really my carer, and has taken on everything I can no longer do, he receives no Carer’s Allowance as he still works. He would love to give up and just care for me, but doing so would mean we couldn’t afford to live, even with the Carer’s Allowance.

If I were 65, I wouldn’t have to pay a penny for the carers that I have. My disability, doesn’t come into the equation at all, something I just don’t understand. I did nothing wrong to become disabled, yet I am treated worse than those who are old, how does that make sense?

I can’t even imagine what your going through. Just reading this I could feel the anxiety welling up within me. I..I can’t imagine having to go through this daily but I do empathize, feel your exhaustion and pain sweety.

I don’t know if this has been mentioned, but why can’t you give the regular nurse and aid a key? That are two less buzzers, and they can lock up on their way out?
I’m sorry this arrangement doesn’t meet your expectations! [[[HUG]]]

I don’t have a regular nurse, they change about over the month and the care company, doesn’t want the responsibility of their carers having keys for loads of flats. It would only take one rogue carer to give them a bad name. 🙂